Wednesday, April 13, 2011

Join me for WEGO Health’s Webinar: Navigating Your Health Narrative!

Hi fellow Hepatitis C advocates! Please join me for WEGO Health’s Webinar: Navigating Your Health Narrative!
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You can register for WEGO Health’s exciting new webinar too so I wanted to share with everyone. Here are the particulars:

What: Navigating Your Health Narrative Webinar
Who: Health Activist Panel with Lisa E, Erin B, Jenni P, and Amanda D
When: Thursday April 21st 8pm EST (the webinar will last one hour)
Where: Sign up here http://info.wegohealth.com/navigating_your_health_narrative/?source=health_blogger_contest_invite
and you’ll get all the details

The webinar is for anyone from seasoned bloggers to blog-readers who want to start their own blog. The webinar will cover the basics of blogging and include more advanced tips and tricks for promoting posts, managing your time, and establishing your blog “voice” and how to raise awareness about your condition through blogging.

By signing up you’ll also have a chance to ask specific questions for the Health Activist panel that will be answered during the live Q&A portion of the webinar. You’ll get access to the archived version of the webinar!

Please help me spread the word to the Hepatitis C Community!

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Monday, April 11, 2011

Hepatitis Health Action! The Hepatitis Community Responds to Health Care Reform

Hepatitis Health Action!
The Hepatitis Community Responds to Health Care Reform
Action Alert!

Prevention Funding in Health Care Reform Under Attack

Tell Your Representative to Vote NO on H.R. 1217

On April 5th, Republicans in the House of Representatives continued their assault on the Affordable Care Act when the House Energy and Commerce Committee voted along partisan lines in favor of H.R. 1217, which would repeal the Prevention and Public Health Fund. This fund, part of the health care reform law, provides money each year for vital prevention and public health services. The fund will grow each year until it eventually provides $2 billion/year.

This fund offers a great opportunity for us to get some of the money targeted to viral hepatitis prevention, screening, and testing programs. How can we advocate for that money if the entire fund is repealed. We also must protect this fund as part of defeating the ongoing strategy by those who oppose the Affordable Care Act to attack the law by repealing and defunding its important pieces.

The full House of Representatives is expected to vote on H.R. 1217 as early as this week. Please take a few minutes to call your Representative and tell him/her to vote NO.

What YOU can DO:

Please call your U.S. House Representative immediately. We are hearing directly from Congressional staff that phone calls are the most effective form of communication.

Call the Capitol Switchboard toll-free at 1-888-876-6242 and ask to be connected to your Representative. When you reach your Representative’s office, tell whoever answers the phone that you are a constituent and that you would like to speak to the staff person who handles health care issues. Whether you speak to the staff person live or leave a voicemail, tell him/her:

“My name is _______________ and I live in (city/state). I am calling to urge Representative ____________ to vote no on H.R. 1217. This bill would repeal the Prevention and Public Health Fund, which is an important part of the Affordable Care Act. This Fund is a great opportunity to provide badly needed funding for viral hepatitis prevention, testing, and screening programs and must be preserved.”

Thank you for taking the time to make a difference! Please spread the word.

Get involved with Hepatitis Health Action!

· Sign up for the Hepatitis Health Action email list by visiting http://groups.google.com/group/HepHealth or, email Christina at cchun@projectinform.org and we will make sure you are added.

· Join Hepatitis Health Action’s Facebook group: http://tinyurl.com/hephealthfacebook where you can participate in discussions with other advocates and share your ideas and strategies.

· Follow Hepatitis Health Action’s blog for news and commentary: http://hephealthaction.wordpress.com

Hepatitis Health Action is a new campaign led by viral hepatitis advocates working to make sure that health care reform addresses hepatitis B and C.

Martha Saly
Director
National Viral Hepatitis Roundtable
707-480-0596
www.nvhr.org

The National Viral Hepatitis Roundtable is a coalition of public, private and voluntary organizations dedicated to reducing the incidence of infection, morbidity and mortality from viral hepatitis in the United States

Sunday, April 3, 2011

Quadruple therapy shows 100 percent SVR for HCV patients previously unresponsive to treatment

Quadruple therapy shows 100 percent SVR for HCV patients previously unresponsive to treatment


Is this treatment approach the next HCV therapy frontier?

Berlin, Germany, Saturday 02 April 2011: Exciting new data presented today at the International Liver CongressTM 2011 show that quadruple therapy in chronic hepatitis C (HCV) patients suppressed the emergence of resistant variants and resulted in a 100% rate of sustained virological response - undetectable HCV RNA - 12 weeks after treatment (SVR12).1

In the quadruple therapy study, HCV patients were given four drugs in combination; pegylated Interferon-alpha (PegIFN-alpha); ribavirin (RBV); and two different direct-acting antivirals (DAAs) BMS-650032 (an HCV NS3 protease inhibitor) and BMS-790052 (an HCV NS5A replication complex inhibitor).

The current standard of care (SoC) for HCV therapy is PegIFN-alpha plus RBV – a dual therapy. The addition of DAAs (currently in phase-III clinical trials) marks the next step in treatment evolution – a triple therapy. However, the new data presented today suggests that quadruple therapy could be the next generation of treatment for chronic HCV patients.

Professor Heiner Wedemeyer, EASL'S Secretary General, said: "Quadruple therapy is possibly the future of HCV treatment; this study goes a way to confirming that. While it's expected that the first DAAs and triple therapy will be approved for use later this year, quadruple therapy appears to have a more profound effect on virological response, with less of a resistance problem."

The study may also provide new hope for a growing number of HCV patients who cannot be effectively treated for chronic hepatitis with current treatments.

The Phase-IIa trial looked at a cohort of 21 HCV genotype 1 null responders (patients who have failed to respond to previous treatment), of whom 19 had an unfavourable IL28B genotype, which predisposes HCV patients to treatment failure.

Only about 30% of null responders to PegIFN-alpha/RBV treatment achieve sustained virological response (SVR) when retreated with PegIFN-alpha/RBV plus telaprevir, demonstrating a high unmet medical need.1


References
1. Lok A et al. Quadruple therapy with BMS-790052, BMS-650032 and peg-IFNRBV for 24 weeks results in 100% SVR12 in HCV genotype 1 null responders. Abstract presented at The International Liver CongressTM 2011. http://www1.easl.eu/easl2011/program/Orals/418.htm



http://hcvadvocate.blogspot.com/2011/04/quadruple-therapy-shows-100-percent-svr.html

Friday, February 18, 2011

NVHR: Administration's 2012 Budget Proposal Represents 'Sea Change'

PRESS RELEASE
February 14, 2011
For Immediate Release

Contact:
Martha Saly
mbsaly@nvhr.org
www.NVHR.org

NVHR: Administration's 2012 Budget Proposal Represents 'Sea Change' Budget Proposal Calls for $5 Million Increase

For State-based Surveillance, Screening & Treatment Programs
In National Response to Viral Hepatitis Epidemic

Washington, DC-The Administration's 2012 budget proposal to increase federal funding for expanded state and locally based viral hepatitis surveillance, screening, and treatment by more than $5 million heralds a sea change in our nation's national strategy to respond to the viral hepatitis epidemic, the National Viral Hepatitis Roundtable (NVHR) said today.

"On behalf of more than 6 million Americans afflicted with viral hepatitis B and C, NVHR would like to say, 'Thank you, Mr. President," said NVHR Director Martha Saly. "With this budget proposal of $25 million, the Administration has recognized that early intervention and prevention are the cornerstones of an effective national viral hepatitis strategy. In the coming months, NVHR looks forward to working closely with the Administration and Members of Congress from both sides of the aisle to make this proposal reality."

More than 6 million Americans are estimated to be afflicted with viral hepatitis and three-quarters of them don't know it. Most infected individuals only become aware of their disease after it has progressed to liver failure, cirrhosis, or liver cancer. With the vast majority of liver cancers caused by unchecked viral hepatitis, the Administration's increased funding proposal for early intervention and treatment promises to help reduce the incidence of liver cancer as well.

The Administration's budget proposal on viral hepatitis specifically states:

"CDC's FY 2012 request of $25,000,000 for VH reflects an increase of $5,222,000 above the FY 2010 level. With this increase, CDC will expand and strengthen surveillance capacity in 10 high burden state and local health departments to detect VH transmission, monitor health disparities and implementation and impact of recommended prevention services; develop and execute VH awareness and training programs for public health and clinical care professionals to implement and scale-up VH screening and care referral; and enhance work with global partners to implement VH surveillance and prevention programs in high burden countries."

The Administration's budget proposal is the first of many new expected developments on viral hepatitis in 2011. Next month, the US Department of Health & Human Services is expected to unveil a national strategy for the prevention of viral hepatitis and liver cancer. On Capitol Hill, bipartisan legislation that garnered support from over 70 House Members in the 111th Congress is expected to be introduced again. And this summer, two new drug therapies are expected to receive final approval from the Food & Drug Administration (FDA) that will great enhance hepatitis C treatment.

www.nvhr.org

Monday, December 20, 2010

Happy Holidays from H.E.A.L.S of the South!

Dear Friends,

As 2010 draws to a close, H.E.A.L.S of the South wants to remind you that we need YOUR help so that we can continue to help others. We depend on you!

H.E.A.L.S of the South continues to support many online support groups, a live support group, does telephone counseling, educational and informational mailings, testing events, health fairs, speaking engagements, Legislative and World Hepatitis Days and we continue to have the HCV Handbook accessible to all online.

During this holiday season, we want to wish everyone a HEALTHY and happy New Year and a very Merry Christmas. We want to remind those of you who might wish to support H.E.A.L.S work that we are a 501(c)3 charitable organization and that contributions made before the end of the year will be tax deductible for 2010.

To donate, visit http://www.HEALSoftheSouth.org and click on the Donation button or send a check to:

H.E.A.L.S of the South
PO Box 180813
Tallahassee, FL 32318

We thank you for your support--financial and otherwise--over the past ten years that H.E.A.L.S has been working towards Hepatitis Education Awareness and Liver Support. We look forward to continuing our collaboration with you during 2011. Remember to educate others to test for Hepatitis C, be vaccinated for Hepatitis A and B and to sign their organ donor cards.

Merry Christmas and Happy New Year!



Mahatma Gandhi put it well: "Be the change you want to see in the
world." It always begins with one person.

Tuesday, November 2, 2010

NVHR Welcomes Dr. Koh’s Remarks at AASLD, But Warns that Viral Hepatitis Battle Demands Decisive National Leadership

November 1, 2010

Contact: Phil Blando, 202-258-4978
pblando@abmpartnersllc.com

NVHR Welcomes Dr. Koh’s Remarks at AASLD, But Warns that Viral Hepatitis Battle Demands Decisive National Leadership

Boston, MA—In a keynote address delivered yesterday afternoon on chronic viral hepatitis, one of the Administration’s top health officials provided an outline of the forthcoming HHS “federal action plan” on viral hepatitis and pledged renewed federal leadership to translate this plan into reality. Dr. Howard Koh, US Assistant Secretary of Health at the US Department of Health & Human Services, made the remarks before thousands of liver health experts at the American Association for the Study of Liver Disease (AASLD) 61st annual meeting in Boston.

“NVHR is encouraged that Dr. Koh recognizes that the viral hepatitis battle can only be won with strong and decisive national leadership,” said Ms. Lorren Sandt, NVHR Chair and Executive Director of Caring Ambassadors Program, based in Portland, Oregon. “Given all that is at stake, we are eager to review the forthcoming HHS national strategy as soon as possible. Dr. Koh’s remarks yesterday were most welcome and stand in stark contrast to this Administration’s otherwise lackluster response to this urgent public-health crisis. Chronic viral hepatitis is a winnable public-health battle and it’s high time the Administration responded accordingly.”

More than 5 million Americans are afflicted with chronic viral hepatitis B or C and an estimated 500 million individuals are infected worldwide. Most Americans afflicted with chronic viral hepatitis are unaware they are infected. Without targeted screening and testing programs for those most at risk, most individuals only become aware of their condition after their infection progresses to liver failure, cirrhosis, or liver cancer. Viral hepatitis is the overwhelming cause of liver cancer, which kills nearly 20,000 Americans annually.

In his remarks, Dr. Koh outlined six key areas that will provide the foundation of the new HHS national strategy. These areas include educating providers; strengthening surveillance; better care, screening, and treatment; encouraging appropriate vaccinations to reduce the incidence of hepatitis B; reducing drug use; and protecting health workers from infections. NVHR continues to have concerns that the Administration’s funding levels for state-based viral hepatitis screening and treatment programs are wholly inadequate. In fact, federal funding for 2011 is actually less than it was a decade ago. Meanwhile, this crisis has only worsened.

Ms. Sandt added, “There is a strong expert consensus about what needs to be done to address the chronic viral hepatitis crisis. Thus far, we have lacked the political will. Policymakers face a stark choice: we can either invest the resources now to pay for successful viral hepatitis intervention and treatment or we can pay for failure over the next two decades with billions of dollars in avoidable medical costs and thousands of unnecessary liver transplants and deaths.”

NVHR is a coalition of more than 170 public, private, and voluntary organizations dedicated to reducing the incidence of infection, morbidity, and mortality from chronic viral hepatitis that afflicts more than 5 million Americans. www.nvhr.org

Sunday, October 3, 2010

NVHR: In Fighting for ‘Six Winnable Battles,’ CDC May Lose the Nation’s Overall Public-Health War

NVHR: In Fighting for ‘Six Winnable Battles,’ CDC May Lose the Nation’s Overall Public-Health War

WASHINGTON, Sept. 30 /PRNewswire-USNewswire/ — In response to the Centers for Disease Control (CDC) Director Dr. Thomas Frieden’s release of “six winnable battles” in health care, Ms. Lorren Sandt, Chair of the National Viral Hepatitis Roundtable (NVHR) and Executive Director of Caring Ambassadors Program, based in Portland, Oregon, released the following statement:

“The CDC’s newly released ‘six winnable battles’ strategy makes a mockery of the broad-based, comprehensive, and integrated public-health strategy that our nation so desperately needs. In seeking to win six narrowly defined health care battles, the CDC may well lose the overall public-health war.

“Chronic viral hepatitis B and C are among dozens of conditions that are shortchanged by this PR-driven public-health approach from CDC. We can and must do better. How can a vaccine preventable virus, hepatitis B, and the only virus we can cure, hepatitis C, fail to make this list?

“Chronic viral hepatitis afflicts more than 5 million Americans directly and, by extension, tens of millions more of their loved ones. Most Americans are not aware they are infected until they present with serious related illnesses. Without adequate screening and treatment, chronic viral hepatitis often progresses to cirrhosis, liver cancer, and liver failure.

“Over the past year, experts from the Institute of Medicine, the American Association for the Study of Liver Diseases, and the Trust for America’s Health have all identified how best to address the viral hepatitis epidemic with common-sense action plans. Regrettably, the Administration is lacking the political will to implement them.

“The CDC’s omission of viral hepatitis from its list of ‘winnable battles’ is not simply an oversight – it’s an abdication of duty to many Americans who may well lose their battle with chronic viral hepatitis in the decades to come.”

NVHR is a coalition of more than 170 public, private, and voluntary organizations dedicated to reducing the incidence of infection, morbidity, and mortality from chronic viral hepatitis that afflicts more than 5 million Americans. http://www.nvhr.org/

SOURCE National Viral Hepatitis Roundtable

RELATED LINKS

http://www.nvhr.org/

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CDC chief picks 6 ‘winnable battles’ in health

ATLANTA — Where would you start if you were charged with keeping the nation healthy? Dr. Thomas Frieden, director of the Centers for Disease Control and Prevention, has chosen six priorities — winnable battles, he calls them.

They are smoking, AIDS, obesity/nutrition, teen pregnancy, auto injuries and health care infections. These are long-standing, major challenges that get a lot of attention already.

But elevating a handful of problems above dozens of others is a bold move for a public health official. So far, it’s been received like a bucket of cold water — invigorating some, infuriating others.

Many advocates, legislators and others in public health have devoted their lives to problems that did not make Frieden’s short list. So there are complaints.

A CDC employee blog is peppered with postings like, “I guess climate change is not a battle worth winning,” and “Don’t we still owe the patients of tomorrow an investment in things that may not pay off immediately?”

Some advocates wonder aloud just how targeted federal public health dollars are going to be. A particular point of concern is hepatitis C, a long under-recognized liver-destroying virus which has infected more than 3 million Americans. Some experts consider the issue a ticking time bomb and have called for the government to step up efforts to prevent it and better diagnose and treat people who already are infected.

Hepatitis B and C already are “badly neglected” by the CDC, and their omission from Frieden’s winnable battles list is more bad news, said Bruce Burkett, past president of the National Hepatitis C Advocacy Council.
“I was very disappointed that it wasn’t on there. This is going to affect millions by not being on there,” he said.

Frieden, who took over CDC in June last year, already had a reputation as something of a public health maverick. When he started his previous job as New York City’s health commissioner in 2002, he began by identifying the city’s most pressing health issues. He led campaigns to ban smoking in the workplace, tax soda, cut salt in processed foods, and ban artificial trans fats in restaurants.

It’s no surprise that he is boldly painting targets at the CDC, said Dr. Jo Ivey Boufford, president of the New York Academy of Medicine. She’s a fan of Frieden’s who worked with him as a member of an advisory council to the city health department.

Frieden’s CDC job, ironically, does not provide the same kind of power he had in New York City to engineer bans or tax increases. But Frieden calls his new short list “winnable battles” because, he says, proven programs can save lives and reduce harm from each of these health problems. He believes government can make dramatic improvements if available money and manpower are focused.

“In each of these areas we know what to do to make a difference and we need to do it to a much greater extent,” he said in an interview.
Frieden, with a low-key demeanor, has said relatively little about this to the public, though he seems to be building support within the public health community.

There is some nervousness about how far Frieden’s going to take this.
“I think everyone is going to be cautious in how the focus on winnable battles is balanced against other areas” that are also deemed important but may not be as easy to dent, said Jeff Levi, who heads Trust for America’s Health, a research group.

Top CDC officials have been quick to say they have no intention of walking away from other public health missions. They couldn’t even if they wanted to, because much of the agency’s funding is directed to certain causes by Congress. According to one estimate, less than one-tenth of 1 percent of CDC’s $6.6 billion budget is discretionary money that can be channeled into the winnable battles campaign. Indeed, the agency has been asking for more flexibility.

But there’s power in perception, especially concerning CDC’s grant money to states. Nearly a quarter of that is targeted at the six battle areas, which already were major areas of interest. State health officers say they’re acutely aware of Frieden’s priorities and want him to know it when they apply for CDC money.

“We’re in the position of focusing pretty much on what we can get federal funds for,” said Will Humble, director of the Arizona Department of Health Services.

Humble and several other public health leaders applaud Frieden’s priorities as an overdue attempt to narrow the public health message and better market health improvement to Americans.

“You can’t market if your message is too diffuse,” Humble said. “If we’re all on the same page and working in the same direction, we can get a lot more momentum.”

This isn’t how many public health officials traditionally operate, partly because they tend to worry about alienating employees, legislators and advocates, observed Stanton Glantz, a University of California-San Francisco expert on the health effects of smoking.
Other top federal health officials have not been as specific. U.S. Surgeon General Dr. Regina Benjamin, the government’s chief health educator, has made the broader themes of prevention and wellness her focus.
But Frieden clearly has the blessing of his Obama administration bosses to set clear targets.

“Getting focused, and getting some quick wins under your belt, is terribly important,” said Victor Strecher, a University of Michigan health behavior expert.

Progress in these areas has long been measured by health statistics. What exactly will constitute a win? Frieden hasn’t said yet.
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Online:
CDC Web page describing winnable battles: http://bit.ly/bCd8Lr

http://www.google.com/hostednews/ap/article/ALeqM5gI1c0qXFNYNrk_xbZ5U2UW798gDQD9IICK2O0?docId=D9IICK2O0